In recent weeks though the national ASI charity I have been speaking to a number of parents who are awaiting diagnosis and are just about to start a long and slow journey. It made me really think and see how far we have come but also to honestly think how did we survive the last few years. The lack of sleep and the constant having to be 100% on the ball and always thinking ahead. Well we have just about by the skin of our teeth. You see progress just in areas you didn’t know you had to look. That parallel path we are on can be a pain in the neck but we don’t really have choice so onwards and upwards really.
Yesterday Boo found the Christmas magazine supplements and decided to check her brothers room in case he got chocolate that she hadn’t – it could be a long few weeks to Christmas.
Angelman Ireland 
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